Parents of children with special needs often struggle with support of others, finding reliable information about options and moving through the grief of parenting a “less than perfect” child. Here is our experience with our son with ADHD.
Imagine arriving in a different destination other than that which you anticipated. Imagine that you do not have your bags packed for the right activities and climate. You have no maps or knowledge of the customs or language. You do not know what information is correct or know who to trust. Your plans have changed. Yet, as you are accepting that your destination is permanent, you realize that you have to make the best of it, or it could destroy you and the rest of your family.
I first came across the inspirational essay, “Welcome to Holland” by Emily Perl Kingsley, years ago when I sat on the board of a neonatal foundation. Working with parents in the trenches of profound shock and grief, during a time that should have been utter joy, was immensely difficult. At that time I was the proud parent of one child, a son my husband and I believed to be “normal.”
I recall feeling guilty on occasion when I sat with parents in the NICU, when I offered support or a listening ear, or when I held and rocked the ever-so-fragile tiny infants that fought for survival. I was blessed with a healthy child while many of these parents faced the possibility of death, long-term challenges, or disabilities stemming from their children’s premature arrivals. I also felt thankful that we had dodged a bullet, however Kingsley’s essay resonated with me as a mother and lodged within my heart.
Forward years ahead. My oldest boy was a handful and exhausting. He was happy and bright, but often without focus. We chalked this up to him being “all boy.” As his parents we appreciated his gifts, but his kindergarten teacher felt otherwise. Vehemently. She called us in for a conference two weeks into the school year. She told us, “I’ve never had a child like him in all of my 25 years of teaching.”
We asked her to work with him, to challenge him; he was in his element when he was challenged. We could tell by the expression on her face that she wasn’t going to embrace our requests and we realized we were in for a very long year.
Our son was clueless about what going on. We had many parent-teacher conferences that year. The last one was in early spring, after we had already made the decision to enroll him in another school with much smaller classes and interactive learning.
Our son thrived in this new school environment, yet his focus continued to lapse. We painfully faced that our son might have some issues and had him evaluated by a team of professionals to make sure he was not being falsely diagnosed. The testing indicated what we had long suspected but tried to deny—he had ADHD. We worked through our denial and chose to stay in daily contact with his teachers. We made changes to his diet. We put a behavioral management plan in place.
We saw no improvements from the dietary changes or from the behavioral techniques we implemented. Our son’s grades fluctuated. He was focused in one class and disruptive in another. There was no pattern throughout the day or by subject matter. His behavior was just as maddening in karate—an activity we thought would help curb his impulsiveness.
Emotionally, we rode the wild roller coaster with him daily. Out of options, we began to consider the possibility of medication, something that was of great concern to us. My husband and I had many long discussions—just the two of us, and with doctors—often accompanied by tears. We continued to straddle the fence.
Our son’s behavior became more erratic as puberty set; we made the decision to medicate him. He would be taking a Class CII drug, a federally controlled substance that could lead to abuse or dependence and carried the possibility of many other serious side effects. It was one of the toughest decisions we ever made, but the arrival of our second child—with her serious sensory processing spectrum disorder—underscored how important it was to intervene, and early.
The medication made an immediate difference. Our son was able to focus and control his actions. He could stay on task and out of trouble. In turn his grades stayed up and his confidence grew. He graduated high school with honors and received many merit awards to attend college.
We have had countless talks about the seriousness of the drug he takes. About the need to monitor him daily and share how he feels emotionally and physically. About how kids would likely ask him for some of it when they were under stress (which has happened) and what those consequences could be if he was caught doing so, by us and the law.
Looking back, we put off the decision to medicate our son far longer than we should have. But when in the moment, there is rarely the gift of perspective. Dragging my feet I arrived in Holland, only a different region than I had with my daughter.
Slowly, through the years and with my son’s openness about his special needs, I’ve become acculturated. Holland is not a horrible scary place, just different. As Kingsley says in her essay, “…you must go out and buy new guide books. And you must learn a new language.” I have. I have embraced being the parent of kids with special needs, thankful that Holland exists and that I am able to appreciate the very special, wonderful things that it offers.
Author and freelance writer Judy M. Miller works with pre- and adoptive parents, equipping them with techniques and information; and encouraging and empowering adoptive families through difficult times.